Life Expectancy of Superficial Siderosis Patients

Life expectancy, on the surface a straightforward question. It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this can consume you. Superficial Siderosis Life Expectancy, two words and it becomes intensely personal. The early impressions were dark; no cure, the damage is irreversible and fatal. That word fatal is a definite attention grab.

The day we found out about superficial siderosis I read that statement and my heart dropped. Three years into this journey and we can add some personal insight into understanding the nature of this disease.

If you study possible combinations of symptoms that could assault you, it should become clear while your body and psyche will suffer none are life-threatening in an immediate sense. It is a fair assumption the toll on your system is punishing. The thought of autonomic problems or dementia is alarming, but only a small percentage will ever face these issues.

We know that in the early stages

superficial siderosis

moves slowly


Gary 2014

May 2014

Symptoms creep along driving you crazy, but it does take time. Twenty-two years passed after Gary’s tumor removal before his symptoms progressed to where he had to change his life radically.

There does seem to be a point of acceleration. For us, the changes during the past three years have been intense. Slow progression has evolved into something else. It may be the degeneration has entered a more severe phase, or maybe the effects are just more visible.

Gary 2017

May 2017

“…does superficial siderosis lead to an early death? We don’t know the answer to that. We don’t know if superficial siderosis causes an earlier mortality. The reason we don’t know that is because we haven’t studied enough patients over time to be able to see that.” – Dr. Michael Levy, SS Webinar


We’re just sharing what we see, but I’d like to change the term if I can. Your diagnosis is not a death sentence.


Long or short it’s our life, so expect a fight.

About roriandgary

Our life after a diagnosis with the rare disease superficial siderosis. We share our thoughts on how we deal with the clinical symptoms and life changes that come with a chronic illness.


  1. Thank you for all the information and wishing you a Happy and Peaceful 2018.

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